Quiet times over here in Chemoland.
My oncologist gave me a little talking-to about the need to embrace the lovely pharmaceuticals so readily available to me these days.
“You’re a cancer patient; you really shouldn’t be having qualms about pain medication,” she said, while strongly recommending that I take Percocet at bedtime for the two nights after chemo. “It’s much easier to control pain by getting to it before it starts.”
And it turns out all those years of med school paid off: She was right.
Last week (Taxol #2), I downed the meds as she suggested. No bone pains! (Okay, some minor aches, but well within the range of normal.)
Yesterday was Taxol #3. Sadly, my IV Benedryl euphoria is already a lot less awesome than the first time. The fluorescent lights above my barcalounger do a nice little strobe number for a couple of minutes when it kicks in and my IQ drops 30 or so points, but that’s about it for jollies.
And by evening, the steroids mania arrived while the Benedryl floaty feeling was still lingering. The overall effect is how I imagine those alcohol-laced energy drinks make frat boys feel: Like a hyper drunk.
That still sounds more fun than how I feel: Wired but blah, boring, bored. Like a Jonas brother who’s just downed five macchiattos.
And not wired in a good way, like let’s run around the house Christmas-fying and tidying everything (Mark begs to disagree with that definition of “wired in a good way”), but wired like, I’m exhausted but four hours after going to sleep, sinister forces compelled my eyelids to pop open and my brain to launch into full alert.
This treatment puts me just past the half-way mark for chemo. Eleven weeks down; nine to go. Then it'll be radiation time.
Saturday, December 18, 2010
Tuesday, December 7, 2010
Big-time bummer
At 1 am Sunday morning, I woke to the sound of whimpering.
It was coming from me.
The long bones in my legs ached as they’ve never ached before. They felt as if I’d run a marathon barefoot on concrete or as if a cruel giant had wrung them out like wet laundry. I spent the rest of the night unable to ignore the excruciating throbbing. By morning my arm bones were aching as well. I called the cancer center first thing Sunday morning.
The on-call oncologist thought it might be a reaction to Neulasta, the post-chemo drug that stimulates bone marrow to make more white blood cells. It often causes bone pain – essentially intense growing pains. He suggested taking a Claritin which sometimes can block Neulasta’s effects. An hour later I called him back, barely able to speak through the pain.
“You need to take a Percocet or Vicodin,” he said. I had plenty left over from my surgery and I gratefully complied. Within 10 minutes, the pain mercifully drifted away. You can take Percocets every six hours. At precisely the five-hour mark, I could feel the miracle end and the pain start up again.
By Monday morning I was still in pain, but wanted to stop the Percocets so I wouldn’t be in a zombie fog. I needed to drive to an acupuncture appointment, and I wanted to go back to work on Tuesday as planned. My oncologist’s nurse told me to try ibuprofen. It lessened the pain enough for me to function, and after getting a decent night’s sleep on Monday, I felt more like my regular self and the aching had subsided.
Despite my couple of hours of Benadryl jollies, Taxol so far has turned out to be a big-time bummer.
A few hours after chemo on Friday, I was still loopy from the Benadryl, staggering and slurring, when suddenly the IV steroids kicked in, and I began speed-talking, emitting staccato bursts of information at Mark, who was bemused. By bedtime, the fun, floaty feeling from Benadryl had worn off but the steroids had me wired, even though I was desperate for sleep.
That night, I got just four hours sleep, which left me feeling wasted all day on Saturday. Saturday night, I expected to catch up, and instead got slammed with the bone pain after yup, just another four hours.
Today a friend e-mailed: “Did you hear the news about Elizabeth Edwards?”
I hadn’t heard any updates on her in a while and desperately hoped the news was that she’d had a spontaneous remission. Of course that wasn’t so.
Elizabeth Edwards struck me as a woman with unusual amounts of both grit and grace. Her final public statement, issued on Monday just a day before her death, exemplifies that:
It was coming from me.
The long bones in my legs ached as they’ve never ached before. They felt as if I’d run a marathon barefoot on concrete or as if a cruel giant had wrung them out like wet laundry. I spent the rest of the night unable to ignore the excruciating throbbing. By morning my arm bones were aching as well. I called the cancer center first thing Sunday morning.
The on-call oncologist thought it might be a reaction to Neulasta, the post-chemo drug that stimulates bone marrow to make more white blood cells. It often causes bone pain – essentially intense growing pains. He suggested taking a Claritin which sometimes can block Neulasta’s effects. An hour later I called him back, barely able to speak through the pain.
“You need to take a Percocet or Vicodin,” he said. I had plenty left over from my surgery and I gratefully complied. Within 10 minutes, the pain mercifully drifted away. You can take Percocets every six hours. At precisely the five-hour mark, I could feel the miracle end and the pain start up again.
By Monday morning I was still in pain, but wanted to stop the Percocets so I wouldn’t be in a zombie fog. I needed to drive to an acupuncture appointment, and I wanted to go back to work on Tuesday as planned. My oncologist’s nurse told me to try ibuprofen. It lessened the pain enough for me to function, and after getting a decent night’s sleep on Monday, I felt more like my regular self and the aching had subsided.
Despite my couple of hours of Benadryl jollies, Taxol so far has turned out to be a big-time bummer.
A few hours after chemo on Friday, I was still loopy from the Benadryl, staggering and slurring, when suddenly the IV steroids kicked in, and I began speed-talking, emitting staccato bursts of information at Mark, who was bemused. By bedtime, the fun, floaty feeling from Benadryl had worn off but the steroids had me wired, even though I was desperate for sleep.
That night, I got just four hours sleep, which left me feeling wasted all day on Saturday. Saturday night, I expected to catch up, and instead got slammed with the bone pain after yup, just another four hours.
Today a friend e-mailed: “Did you hear the news about Elizabeth Edwards?”
I hadn’t heard any updates on her in a while and desperately hoped the news was that she’d had a spontaneous remission. Of course that wasn’t so.
Elizabeth Edwards struck me as a woman with unusual amounts of both grit and grace. Her final public statement, issued on Monday just a day before her death, exemplifies that:
You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human.
But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel towards everyone who has and continues to support and inspire me every day. To you I simply say: you know.
Saturday, December 4, 2010
Taxol No. 1: "Better living through chemistry"
At chemo on Friday, my roomie, her husband, my friend Jessica and the nutritionist were all engaged in a spirited discussion about Ethiopian culture and lifestyle, when the Benadryl in my IV hit my system.
I realized I had an important point to contribute to the high-level discourse.
“Hey, guys,” I interrupted. “Hey, I feel like I’m floating. It’s like I’m on the ceiling looking down at all of you.” I groped for the right phrase to capture the experience and was proud when I concocted the perfect original description. “It’s, it’s like far out.”
They all turned to me politely. Bernadette, the nutritionist, who has years of experience with chemo patients, was the first to react. She rolled her eyes and a huge smile spread across her face.
“Better living through chemistry, eh, Carolyn?” she said. “Just wait until tonight when the steroids kick in. Then you’ll be hyper.”
Finally, finally after all these weeks of drugs that cause exhaustion, nausea and
various aches and pains, finally, I’ve scored a decent drug. Something downright, dare I say, recreational.
Intravenously administered Benadryl, I think I love you.
People keep asking, “Why don’t you get yourself some medical marijuana?”
Clearly I’d qualify, since you can get a prescription for it with a hangnail. But I gave up pot after freshman year because it triggered too much paranoia. Faithful readers of this blog know that I’m already doing a perfectly fine job becoming a paranoid wreck without any pharmaceutical intervention.
Actually I have done really well with not dabbling in paranoia over the past couple of weeks. I’ve stopped Googling medical sites, and I didn’t even have to have Mark install child-monitoring software on my laptop.
Still, there was a paranoia trigger at chemo.
An hour into my treatment, suddenly a nurse bolted past our door, soon followed by three or four other nurses, all running flat out. “Something’s happening,” said Vivian, my roommate, looking scared. “I’ve never seen that before.” A loudspeaker crackled. “Code Indigo in the treatment center,” a voice intoned. What, they think cancer patients can't translate “indigo” into “blue”? From my years of “ER” viewing, I knew Code Blue means cardiac arrest. Vivian and I looked at each other; we were both close to tears. I could tell we were thinking the same thing: This was a sobering reminder that a lot can go wrong when you pump poison into someone’s veins.
I’m now on to the second half of chemo, getting a drug called Taxol, every week for 12 weeks. It’s derived from the bark of the Pacific Yew. A cancer-support group buddy dropped off a branch from her yew tree “to propitiate the spirits of the forest who gave us this drug” as she poetically put it. Taxol’s main side effect is neuropathy, and to forestall that I’m getting weekly acupuncture and have a whole new set of supplements to choke down. Taxol also can cause severe allergic reactions, hence the IV Benadryl as well as the steroid, Decatron.
Over Thanksgiving, I allowed myself to take a little break from the Cancerverse, indulging in a diet soda now and then, being less scrupulous about the gallons of water I’m supposed to drink, skipping some of my vitamins and generally just trying to feel more normal. When the holiday was over, I didn’t get back on track.
Bernadette took one look at my lab results and called me out.
“You’re not drinking enough water,” she said right away. “Look how your uric acid levels are elevated.”
A girl can’t get away with anything around here.
I realized I had an important point to contribute to the high-level discourse.
“Hey, guys,” I interrupted. “Hey, I feel like I’m floating. It’s like I’m on the ceiling looking down at all of you.” I groped for the right phrase to capture the experience and was proud when I concocted the perfect original description. “It’s, it’s like far out.”
They all turned to me politely. Bernadette, the nutritionist, who has years of experience with chemo patients, was the first to react. She rolled her eyes and a huge smile spread across her face.
“Better living through chemistry, eh, Carolyn?” she said. “Just wait until tonight when the steroids kick in. Then you’ll be hyper.”
Finally, finally after all these weeks of drugs that cause exhaustion, nausea and
various aches and pains, finally, I’ve scored a decent drug. Something downright, dare I say, recreational.
Intravenously administered Benadryl, I think I love you.
People keep asking, “Why don’t you get yourself some medical marijuana?”
Clearly I’d qualify, since you can get a prescription for it with a hangnail. But I gave up pot after freshman year because it triggered too much paranoia. Faithful readers of this blog know that I’m already doing a perfectly fine job becoming a paranoid wreck without any pharmaceutical intervention.
Actually I have done really well with not dabbling in paranoia over the past couple of weeks. I’ve stopped Googling medical sites, and I didn’t even have to have Mark install child-monitoring software on my laptop.
Still, there was a paranoia trigger at chemo.
An hour into my treatment, suddenly a nurse bolted past our door, soon followed by three or four other nurses, all running flat out. “Something’s happening,” said Vivian, my roommate, looking scared. “I’ve never seen that before.” A loudspeaker crackled. “Code Indigo in the treatment center,” a voice intoned. What, they think cancer patients can't translate “indigo” into “blue”? From my years of “ER” viewing, I knew Code Blue means cardiac arrest. Vivian and I looked at each other; we were both close to tears. I could tell we were thinking the same thing: This was a sobering reminder that a lot can go wrong when you pump poison into someone’s veins.
I’m now on to the second half of chemo, getting a drug called Taxol, every week for 12 weeks. It’s derived from the bark of the Pacific Yew. A cancer-support group buddy dropped off a branch from her yew tree “to propitiate the spirits of the forest who gave us this drug” as she poetically put it. Taxol’s main side effect is neuropathy, and to forestall that I’m getting weekly acupuncture and have a whole new set of supplements to choke down. Taxol also can cause severe allergic reactions, hence the IV Benadryl as well as the steroid, Decatron.
Over Thanksgiving, I allowed myself to take a little break from the Cancerverse, indulging in a diet soda now and then, being less scrupulous about the gallons of water I’m supposed to drink, skipping some of my vitamins and generally just trying to feel more normal. When the holiday was over, I didn’t get back on track.
Bernadette took one look at my lab results and called me out.
“You’re not drinking enough water,” she said right away. “Look how your uric acid levels are elevated.”
A girl can’t get away with anything around here.
Thursday, November 18, 2010
Chemo No. 4: "The last of the worst"
“Um, I don’t want to alarm you,” I said to my friend Jan as we left the pharmacy yesterday, “but do you have a bag I can hold just to have handy on the ride back home? I’d hate to have anything happen to your nice car.”
She understood exactly what I meant without my spelling out the icky details.
Yesterday was my final session with the sledgehammer chemo drugs Adriamycin and Cytoxan – “the last of the worst,” as Mark put it. It was also my nastiest bout of nausea yet.
Both drugs have evocative histories – Adriamycin, belying its ugly side effects, is named after the beautiful Adriatic Sea. It was derived from microbes found in the soil outside an 13th century Italian castle, Castel del Monte.
Cytoxan is a derivative of the mustard gas used to grotesque effect in World War I. Every time I get it, I can’t help thinking of “Dulce et Decorum Est” – “Gas! Gas! Quick, boys! — an ecstasy of fumbling.” Mercifully, I don’t have the full terrors of what comes next committed to memory, but a single reading of the poem makes you think you’re insane to voluntarily have that stuff injected in your veins.
Both drugs have been major cancer-fighting agents for more than half a century. That underscores that in fact some cancer treatments haven’t changed significantly – what has changed is the calibration of the doses, and (very luckily for me) the development of much stronger and more effective anti-nausea drugs.
Despite those drugs, I spent a very uncomfortable afternoon and evening (although thankfully I never needed that bag I kept handy), but then I went to bed, slept all night and woke up with just my standard day-after mild queasiness. Somehow it felt appropriate for my final AC that I got the badge of honor of the symptoms everyone most associates with chemo.
And I am relieved that I’ve made it through the worst part of chemo.
Part Two will consist of 12 weekly sessions with Taxol, which doesn’t cause the same gastro-intestinal problems as AC. It does cause exhaustion, something I’m already feeling plenty of from the AC. By 6 pm every day, I feel as if a giant hand is pressing me down on the couch and my brain has turned into a bowl of mush.
Taxol’s biggest side effect is neuropathy – tingling, numbness and sometimes pain in the fingers and toes. Michelle, my nice chemo nurse yesterday, said that virtually all Taxol patients experience some neuropathy. “You’ll notice you’ll have trouble buttoning your clothes and you’ll start dropping things,” she said. “Your feet might feel like you’re walking on coals.”
But neuropathy is usually not permanent for people like me who get reduced doses over 12 weeks, she said. If the symptoms get too severe, my oncologist will temporarily suspend treatment until they subside. The worse the neuropathy gets, the higher the chance that it will stick around. One of the cancer center doctors is an acupuncturist and I’ve started treatments with her to try to lessen its impact. They are pretty good there about “integrative medicine” – incorporating Eastern as well as Western treatments.
When I saw my own oncologist Dr. D yesterday, I told her how anxious I’d been feeling about what Dr. Hope conveyed (BTW, Dr. Hope was compassionate in her presentation, she had a perfectly fine bedside manner; it’s just that the information she had to share was something that no amount of kindness could soften).
Dr. D said simply: “Well, you’re young and we’re doing everything we can.”
I am starting to emerge from my two weeks in Freak Out City. For one thing, I just can’t live with that heightened level of fear. For another, the things people keep telling me are slowly sinking into my mush-like brain.
As someone who has a hard time living with not-knowing, I really took to heart this beautiful quote from Rainer Maria Rilke's "Letters to a Young Poet" that Lori from C Squad posted on yesterday's comments:
My brother-in-law Richard, who recently emerged cancer-free from his own grueling chemo treatments, had these words of wisdom about the statistics I keep harping on:
So screw 'em indeed. I’m me, not a statistic.
She understood exactly what I meant without my spelling out the icky details.
Yesterday was my final session with the sledgehammer chemo drugs Adriamycin and Cytoxan – “the last of the worst,” as Mark put it. It was also my nastiest bout of nausea yet.
Both drugs have evocative histories – Adriamycin, belying its ugly side effects, is named after the beautiful Adriatic Sea. It was derived from microbes found in the soil outside an 13th century Italian castle, Castel del Monte.
Cytoxan is a derivative of the mustard gas used to grotesque effect in World War I. Every time I get it, I can’t help thinking of “Dulce et Decorum Est” – “Gas! Gas! Quick, boys! — an ecstasy of fumbling.” Mercifully, I don’t have the full terrors of what comes next committed to memory, but a single reading of the poem makes you think you’re insane to voluntarily have that stuff injected in your veins.
Both drugs have been major cancer-fighting agents for more than half a century. That underscores that in fact some cancer treatments haven’t changed significantly – what has changed is the calibration of the doses, and (very luckily for me) the development of much stronger and more effective anti-nausea drugs.
Despite those drugs, I spent a very uncomfortable afternoon and evening (although thankfully I never needed that bag I kept handy), but then I went to bed, slept all night and woke up with just my standard day-after mild queasiness. Somehow it felt appropriate for my final AC that I got the badge of honor of the symptoms everyone most associates with chemo.
And I am relieved that I’ve made it through the worst part of chemo.
Part Two will consist of 12 weekly sessions with Taxol, which doesn’t cause the same gastro-intestinal problems as AC. It does cause exhaustion, something I’m already feeling plenty of from the AC. By 6 pm every day, I feel as if a giant hand is pressing me down on the couch and my brain has turned into a bowl of mush.
Taxol’s biggest side effect is neuropathy – tingling, numbness and sometimes pain in the fingers and toes. Michelle, my nice chemo nurse yesterday, said that virtually all Taxol patients experience some neuropathy. “You’ll notice you’ll have trouble buttoning your clothes and you’ll start dropping things,” she said. “Your feet might feel like you’re walking on coals.”
But neuropathy is usually not permanent for people like me who get reduced doses over 12 weeks, she said. If the symptoms get too severe, my oncologist will temporarily suspend treatment until they subside. The worse the neuropathy gets, the higher the chance that it will stick around. One of the cancer center doctors is an acupuncturist and I’ve started treatments with her to try to lessen its impact. They are pretty good there about “integrative medicine” – incorporating Eastern as well as Western treatments.
When I saw my own oncologist Dr. D yesterday, I told her how anxious I’d been feeling about what Dr. Hope conveyed (BTW, Dr. Hope was compassionate in her presentation, she had a perfectly fine bedside manner; it’s just that the information she had to share was something that no amount of kindness could soften).
Dr. D said simply: “Well, you’re young and we’re doing everything we can.”
I am starting to emerge from my two weeks in Freak Out City. For one thing, I just can’t live with that heightened level of fear. For another, the things people keep telling me are slowly sinking into my mush-like brain.
As someone who has a hard time living with not-knowing, I really took to heart this beautiful quote from Rainer Maria Rilke's "Letters to a Young Poet" that Lori from C Squad posted on yesterday's comments:
Have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future,you will gradually, without even noticing it, live your way into the answer.
My brother-in-law Richard, who recently emerged cancer-free from his own grueling chemo treatments, had these words of wisdom about the statistics I keep harping on:
I feel about cancer stats the way Mike Ditka summed up his interest in the past -- "it's for cowards and losers." Though I abhor his neanderthal politics and sell anything antics, Coach D. was right on this point. Forget the charts and probabilities. You are doing great. You have taken some pretty heavy blows and you're still riding your bike and having positive experiences every day. I can't say why an information junkie like me never even was tempted to look up my odds, but I'm glad I didn't. I always doubt actors or writers who say they never read a word of their reviews, but some must be telling the truth. It's how you respond and your body's strength that will matter, not the general population of women who share this burden.
It is really good that you have the blog to work through your fears, but screw the statistics.
(And Mark and I used to memorize all the ballplayers batting averages as kids). But like a slot machine, each at bat, each pull of the lever is an independent event, just like each cancer.
So screw 'em indeed. I’m me, not a statistic.
Tuesday, November 16, 2010
Breaking radio silence
It ain't funny anymore.
I haven't been able to write a word here since I got the second opinion from the great Dr. Hope (that actually and ironically is her real (first) name; if I had crafted a pseudonym, I would have gone with something more apropos, like Dr. Doom).
It was one thing to spin out droll anecdotes about my medical escapades interspersed with reportorial summaries of what I was learning about cancer treatments. That was back in the olden days, two weeks ago, when this still felt like a grand adventure, one of many stories from my long life I’d be telling my grandchildren in my old age.
Dr. UnHope left me with the distinct impression that I might not make it to old age.
Sure, now I don’t have to worry about Social Security going bust before I can collect it, but that’s about the only upside I can conjure up.
Even when she tried to be comforting, it backfired.
What she said: “A few years ago, your kind of cancer would have been a death sentence, but now we have so many more treatment options available.”
What I heard: YOUR CANCER = DEATH SENTENCE
All along, I’ve basically assumed I would be fine. There were some low points, such as when I found out it had spread to my lymph nodes, but mainly I figured my natural robust heartiness could overcome any challenges. Of course, lately I’ve been realizing that cancer is not an outside, alien invader, but my very own cells – my robust, hearty cells – gone crazy. Maybe my own good health means my cancer is extra potent?
Okay, I know that that line of thinking – and dwelling on the “death sentence” sentence and frantically Googling the mortality rates for Stage III breast cancer (I said I wouldn’t do that, but I lied) – is at best, extremely unproductive. At worst, I will drive myself insane with terror.
Nothing in my situation has changed. There haven’t been any new tests that found that the cancer had spread further. It’s just that I’ve been presented with a new, and, yes, fairly grim, interpretation of the existing data.
Mark pointed out: “You’ve made it through three treatments of the hard chemo and you’re doing fine. Maybe it would be best to focus on that.”
I know he’s right. So is my buddy who told me to ignore the statistics. I’m just not quite there yet.
I haven't been able to write a word here since I got the second opinion from the great Dr. Hope (that actually and ironically is her real (first) name; if I had crafted a pseudonym, I would have gone with something more apropos, like Dr. Doom).
It was one thing to spin out droll anecdotes about my medical escapades interspersed with reportorial summaries of what I was learning about cancer treatments. That was back in the olden days, two weeks ago, when this still felt like a grand adventure, one of many stories from my long life I’d be telling my grandchildren in my old age.
Dr. UnHope left me with the distinct impression that I might not make it to old age.
Sure, now I don’t have to worry about Social Security going bust before I can collect it, but that’s about the only upside I can conjure up.
Even when she tried to be comforting, it backfired.
What she said: “A few years ago, your kind of cancer would have been a death sentence, but now we have so many more treatment options available.”
What I heard: YOUR CANCER = DEATH SENTENCE
All along, I’ve basically assumed I would be fine. There were some low points, such as when I found out it had spread to my lymph nodes, but mainly I figured my natural robust heartiness could overcome any challenges. Of course, lately I’ve been realizing that cancer is not an outside, alien invader, but my very own cells – my robust, hearty cells – gone crazy. Maybe my own good health means my cancer is extra potent?
Okay, I know that that line of thinking – and dwelling on the “death sentence” sentence and frantically Googling the mortality rates for Stage III breast cancer (I said I wouldn’t do that, but I lied) – is at best, extremely unproductive. At worst, I will drive myself insane with terror.
Nothing in my situation has changed. There haven’t been any new tests that found that the cancer had spread further. It’s just that I’ve been presented with a new, and, yes, fairly grim, interpretation of the existing data.
Mark pointed out: “You’ve made it through three treatments of the hard chemo and you’re doing fine. Maybe it would be best to focus on that.”
I know he’s right. So is my buddy who told me to ignore the statistics. I’m just not quite there yet.
Wednesday, November 3, 2010
Another day, another chemo: Round No. 3
For today's chemo, we got assigned to the overflow room in the basement -- a big space with six recliners spaced around the walls, a small table with magazines in the middle, and no cell phone reception. It wasn't well set up for support people; Ben perched uncomfortably on a little stool next to me, but it was loverly having a nice long date with him. He and I are losing our twin look because one of us is getting male pattern baldness and has a weird comb-over look going on -- and it's not the male.
The session went fine; not much to report, except that I am now three-quarters done with the hardest part of chemo, Adriamycin and Cytoxan. Here's my patient's-eye view of the HazMat-approved administration of Adriamycin:
The big news is that yesterday, after weeks of pleading, pulling strings and making dozens of phone calls to have my many test results faxed, I met with one of the leading breast cancer doctors in the Bay Area for a second opinion on my treatment. (She had exchanged e-mails with me before I started chemo, concurring on my initial treatment plan of dose-dense AC.)
Dr. Hope is clearly brilliant and has decades of experience. She was also warm and thoughtful; she'd spent considerable time reading through my five-inch thick medical file and she spent almost an hour talking to me.
So much for the good news.
Dr. Hope was definitive that my cancer is Stage III and very aggressive.
She based that on both the number of nodes involved and also on the way it had managed to break down tissue barriers and spread into surrounding flesh once it was in the nodes.
She had several suggestions for making my treatment even more aggressive:
>Once I finish four rounds of AC chemo, I was slated to get four sessions of Taxol every other week. She recommends 12 weekly sessions of Taxol instead (at lower dosages, although the total amount will be higher). Several studies have shown this improves survival rates, and the lower dosages reduce side effects. Taxol's primary side effect is neuropathy, tingling and numbness in fingers and toes that sometimes does not entirely go away, so I'm definitely gung-ho about reducing that. But this will add another month to my chemo regime.
>When breast cancer metastasizes, it most commonly goes to the bones. A class of drugs called Bisphosphonates, which are used to treat osteoporosis, may help prevent bone metastasis. So that would be another addition to my regime. This may mean keeping my not-so-beloved port in for two more years.
>Auntie Flo has been continuing to show up on schedule every month despite all that poison flowing through my veins, which usually induces the old biddy to pack her bags and hit the road. Dr. Hope wryly said it looks like my body really, really doesn't want to enter menopause. She really, really wants me to stop menstruating stat, and so she wants me on monthly injections of Zolodex to accomplish that. That's so I can get started sooner on aromatase inhibitors, a powerful class of hormone-blocking drugs that only work on post-menopausal women.
>She feels my greatest risk for metastatic recurrance will last for 10 to 15 years and thus so should my treatments. Most patients get five years on the aromatase inhibitors; so now I'm looking at double or triple that. I've read that many breast cancer patients are noncompliant about taking them (it's a daily pill) because they hate the side effects, but I'm not going to go into that now. She also pointed out that five years from now there will be lots of new research results and so there may be other treatment/prevention options that we'd explore.
Today when I met with my own oncologist, Dr. D, she concurred with everything recommended by Dr. Hope, who is clearly a goddess in the field. Dr. D herself is no slouch in the brilliance department and also has been quite kind to me and generous in spending lots of time going over everything I bring up.
There is no question in my mind that I'm going to do exactly what Dr. Hope suggested. If she said I needed to hang upside down for an hour a day, learn kick-boxing or move to Utah, I would just do it. (Those all actually might be slightly more pleasant options than what she did suggest, with the possible exception of Utah.) The stakes are too high.
Perhaps you've noticed: not such a funny post today. I could barely muster the one joke about Auntie Flo (a quaint term I never have used previously).
As soon as I got home last night, I hit the Internet and it wasn't for election results. In the same way my tongue compulsively keeps probing a sore spot in my mouth, I feel compelled to look up survival rates every time I get told I'm at a different stage. But after I looked it up and had a few minutes of mild freak-out, I decided to drop that line of thinking.
Here are some words of wisdom from a cancer mentor who dealt with this a few years ago and has been a wonderful source of support and strength:
But may I say something about all these statistics? They can drive you crazy, but remember: those statistics aren't YOU. It's kind of numbers game, but these numbers are pretty general. I had a 20-25 percent chance of recurrence but I tried not to get too worked up about it because those numbers weren't necessarily me. You're in good shape, you have good health care, you eat well, you're otherwise healthy etc. It sounds trite, but ultimately the only statistic that really matters is 0 and 100.
So I lied before when I said Dr. Hope's being nice and smart was the end of the good news.
Actually, I recognize that I am lucky that so much research has been devoted to breast cancer so that there are more treatment options all the time. And I have a lengthy list of things to be grateful for: Mark, Ben and my fabulous friends -- and thank you for all the incredibly loving and supportive blog comments while I'm at it! -- really good medical care, good insurance, manageable side-effects from treatment, supportive employers. And I fully recognize that lots of cancer patients -- certainly anyone with Stage IV -- would trade places with me in a heartbeat.
I'm not excited to spend the next 15 years with a sword of Damocles hanging over my head; I'm not happy about subjecting my body to still more toxic treatments and their potential side effects. But I'm not going to focus on that. My attention is on doing everything possible in the here and now to combat this.
Tuesday, October 26, 2010
Deciduous me
As an East Coast transplant, I miss autumn.
One year, Mark and I went to Montreal and Quebec in October and feasted our eyes on the glorious symphonies of fiery reds, deeper russets, golds, persimmons, bronzes - it was like the Berkeley Bowl fruit aisle writ large across the sky.
This year, I'm celebrating in a simpler way: I have become deciduous.
What I'm shedding is just basic brown but there is plenty of it showering down like crisp fall leaves.
For the past four days, whenever I touch my head, my hand comes away with dozens of hairs adhered to it through static electricity. If I rake my fingers over my head, I end up with fistfuls of hair. My clothes look as if I've been romping with a very friendly cocker spaniel. Don't get me started on the couch, the tub and my pillow.
It didn't take long to figure out how messy this was gonna be.
Just like that, I gained the will to chop it off, although not a full Monty buzz cut.
My regular lady at the cut-rate salon did a nice job with a sort of Joan Baez in her mature days look and assured me that it would grow back curly.
Ben, my son, chauffeured me.
"Hmm, now we have the same haircut," he said when he picked me up.
And it's true! I like looking like a twin to my boy.
Now the sprinkling has slowed down, but if -- or rather when -- it picks up again, eventually I'll look like a twin to Mark, who already has expressed his pre-solidarity with my condition by sporting the chrome-dome look for some years now.
+++
Also did some pre-emptive wig shopping at a hospital-sponsored free place - one wig per cancer patient.
Here are the array of choices. Wanna guess which one I picked?
I decided to be a redhead, in keeping with my autumnal theme. (Second row)
One year, Mark and I went to Montreal and Quebec in October and feasted our eyes on the glorious symphonies of fiery reds, deeper russets, golds, persimmons, bronzes - it was like the Berkeley Bowl fruit aisle writ large across the sky.
This year, I'm celebrating in a simpler way: I have become deciduous.
What I'm shedding is just basic brown but there is plenty of it showering down like crisp fall leaves.
For the past four days, whenever I touch my head, my hand comes away with dozens of hairs adhered to it through static electricity. If I rake my fingers over my head, I end up with fistfuls of hair. My clothes look as if I've been romping with a very friendly cocker spaniel. Don't get me started on the couch, the tub and my pillow.
It didn't take long to figure out how messy this was gonna be.
Just like that, I gained the will to chop it off, although not a full Monty buzz cut.
My regular lady at the cut-rate salon did a nice job with a sort of Joan Baez in her mature days look and assured me that it would grow back curly.
Ben, my son, chauffeured me.
"Hmm, now we have the same haircut," he said when he picked me up.
And it's true! I like looking like a twin to my boy.
Now the sprinkling has slowed down, but if -- or rather when -- it picks up again, eventually I'll look like a twin to Mark, who already has expressed his pre-solidarity with my condition by sporting the chrome-dome look for some years now.
+++
Also did some pre-emptive wig shopping at a hospital-sponsored free place - one wig per cancer patient.
Here are the array of choices. Wanna guess which one I picked?
I decided to be a redhead, in keeping with my autumnal theme. (Second row)
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